If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Can you carry the gene and not express it?

Collapse

About the Author

Collapse

jennvin Find out more about jennvin
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Can you carry the gene and not express it?

    Lisa may remember me from helping my sister-in-law, Cheri, who has HOCM. She talked with another SIL, Dawn, at length about the disease. My husband also has HOCM and earlier this year our daughter who at the time was 14 months old was diagnosed as well. We are currently starting the process of being involved in a research study at Massachusetts General to find the gene.

    What my in-laws would like to know is this:

    1. If another family member has the gene, does that mean he or she will DEFINITELY have HOCM?
    2. Can you carry it and not express it?
    3. If he or she has the gene, can they be just "at risk" for having HOCM?

    I'd like to get a definite answer of yes or no, but know that there may not be one. Any help would be appreciated!!

  • #2
    Re: Can you carry the gene and not express it?

    You can have the gene and not express the disease. A person who has the gene would always be at risk for developing the disease, and would have to be watched very carefully. On the other hand, if the person has no gene, they are in the clear.

    There is a 50% chance that a person with HCM will pass on the gene.

    Hope this helps.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

    Comment


    • #3
      Re: Can you carry the gene and not express it?

      Thank you, it helps very much.

      Comment


      • #4
        Re: Can you carry the gene and not express it?

        In short... at this time it is thought that if you carry the gene it is likely that sometime in your life it will be expressed. We have no idea to what degree or at what age.


        So...yes, no and maybe... sorry that is the best I can do.

        And yes I remember your family - -I hope all is well!

        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment


        • #5
          Re: Can you carry the gene and not express it?

          Hi Lisa and thanks for responding.

          Well, let me start with Cheri. She is doing so-so. Her cardiologist has suggested that she have surgery again, but at this point and time, she has opted not to do so. It was very stressful for her. Her cardiologist said at some point she will get tired of feeling the way she does and may reconsider. We shall see. . .

          As far as my daughter goes, we were actually shocked that they detected it so early in life. For some reason we always had this idea that it couldn't be detected until adolescence. We were just going there to establish a relationship with her pediatric cardiologist and to start a medical file for her. So they did the normal testing, etc. and found it through the echo. I thought my husband was going to faint. Right now she is on a beta blocker but is doing fine. Her doctor said to let her be a normal child, but as far as competitive sports/recretation goes, she will be limited, which we knew.

          So now, we sit and wait to see if the gene can be detected through my daughter's, husband's and Cheri's bloodwork, which could take up to a year.

          Comment


          • #6
            Re: Can you carry the gene and not express it?

            I would like to talk to you - -it has been a while and I would like to know what is happening with Cheri??? I am concerned, there is rarely a need for 2 myectomies in an adult?? Can you PM me a # where I can reach you on Thursday??
            \
            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment

            Today's Birthdays

            Collapse

            Working...
            X